Legislature(2017 - 2018)BARNES 124
03/13/2018 08:00 AM House COMMUNITY & REGIONAL AFFAIRS
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| Audio | Topic |
|---|---|
| Start | |
| SB174 | |
| Adjourn |
* first hearing in first committee of referral
+ teleconferenced
= bill was previously heard/scheduled
+ teleconferenced
= bill was previously heard/scheduled
| + | SB 174 | TELECONFERENCED | |
| + | TELECONFERENCED |
SB 174-PROGRAMS FOR PERSONS WITH DISABILITIES
[Contains discussion of HB 336.]
8:04:08 AM
CO-CHAIR PARISH announced that the only order of business would
be SENATE BILL NO. 174, "An Act relating to the duties of the
Department of Health and Social Services; and relating to the
administration of programs for persons with physical and mental
disabilities."
8:04:42 AM
SENATOR PETER MICCICHE, Alaska State Legislature, as prime
sponsor, introduced SB 174. He noted that during testimony on
SB 174 before the Senate Health and Social Services Standing
Committee, someone he referred to as "Clair's mom" had testified
that anyone with children is "one catastrophe away from needing
services." He explained that a life-changing experience can
come on quite suddenly and result in the need for services from
the Department of Health and Social Services (DHSS). Senator
Micciche said SB 174 would allow DHSS to partner more closely
with persons with physical or mental disabilities "to enable
active participation in their support service." He said this is
a shared vision of over 200 people and organizations, including
the Governor's Council on Disabilities and Special Education and
the Key Coalition of Alaska. Giving persons with disabilities
more control over their support services enhances their lives
and enables their full participation in the social and economic
aspects of their communities. Further, the state benefits from
the cost reduction that results from providing services for the
specific needs of individuals instead of providing "standard
service bundles." Senator Micciche said SB 174 would enable
support services programs to consider the paid and unpaid
support of individuals and would provide "a long-overdue
unifying vision to allocate and apply resources" in a manner
that maximizes the experience of community involvement for
Alaskans with disabilities. Senator Micciche asked committee
members to remember that individuals with disabilities are not
"cattle"; "they are not a number"; but are "amazing individual
Alaskans with the same hopes, dreams, and plans as the rest of
us." He said SB 174 recognizes that, and he urged the committee
to support the proposed legislation.
8:07:34 AM
KAITLYN STANSBERRY, Intern, Senator Peter Micciche, Alaska State
Legislature, presented SB 174 on behalf of Senator Micciche,
prime sponsor. She said the proposed legislation is the product
of input from over 200 individuals in organizations including
the two listed by Senator Micciche, as well as the Alaska Mental
Health Trust and other members of the community. Ms. Stansberry
stated that all persons deserve to be treated with respect and
dignity. The quality of life and treatment is enhanced for
those persons with disabilities who are able to participate in
the programs [that benefit them] because those programs can
encourage those Alaskans to fully engage in their lives and
fully participate in the economic and social environment of
their homes, communities, and state. She said SB 174 would
allow persons with disabilities to more actively participate in
their systems of care, which they use daily. The proposed
legislation would ensure that the available resources are
allocated and applied "in such a manner to maximize the
contributions of Alaskans experiencing disabilities within their
community."
8:09:32 AM
REPRESENTATIVE SADDLER noted that he was co-sponsor of [HB 336],
the House companion bill. He asked what the best term would be
to describe those who are "the subject of a supported decision-
making agreement." For example, he asked if they would be the
principle, the person, the individual, or the client.
SENATOR MICCICHE suggested using "the client."
REPRESENTATIVE SADDLER asked about the legal status of the
agreements.
SENATOR MICCICHE answered there would not be a formal system.
The proposed legislation would not authorize the department to
apply for a waiver to provide medical assistance, payments, or
self-directed personal assistance. He emphasized there should
be equal treatment as with any other client. He said clients
have traditionally been "handed a treatment package, which may
or may not fit their particular lifestyle." He offered an
example of Maggie Winston, who is raising twins, has a job, is
productive, and advocates statewide for persons with mental and
physical disabilities. He said Ms. Winston does not have
physical use of anything below her chest. He reiterated that SB
174 would not require a formal agreement but requests that DHSS
allow autonomy when deciding on services that clients will
receive.
REPRESENTATIVE SADDLER asked what the current number is, in
terms of people with disabilities in Alaska.
SENATOR MICCICHE answered he does not have that number.
8:13:18 AM
REPRESENTATIVE DRUMMOND questioned the use of the word "and"
between "mental and physical disabilities". She asked if that
meant a person had both, because not everyone has both. She
further inquired as to the meaning of "IDB."
SENATOR MICCICHE answered that SB 174 would affect persons with
physical disabilities and persons with mental disabilities. He
added, "It's not one in the same; it affects both of them." He
explained that IDB stands for individuals with developmental
disabilities. He noted that a term used in the past was
"disabled Alaskans"; however, now the term used is "Alaskans
with disabilities," which he opined is an important
differentiation because the person comes first. He added, "We
are all people; some of us have disabilities."
8:15:48 AM
REPRESENTATIVE SADDLER opined that providing services in
cooperation with clients instead of to or for them is a good
thing. He asked how this distinction would "play out."
SENATOR MICCICHE deferred to others who may have a better stance
from which to offer an explanation.
8:17:51 AM
LIZETTE STIEHR, Executive Director, Alaska Association on
Developmental Disabilities (AADD), explained that AADD is the
voice of the providers of services to the clients. The
association currently has 49 dues-paying members and is a direct
provider of services and care coordinators, who also provide
direct services. She said AADD supports the "shared vision"
represented under SB 174, which would provide for "flexible
service array" and "services that are directed and driven by the
person receiving the services rather than a bureaucracy." She
expressed gratitude for the support of Senator Micciche and
Representative Saddler for this legislation, because it would
provide "a consistent and strong platform for individuals to
lead their own services." She echoed the remarks of the bill
sponsor and Ms. Stansberry about the lives that would be
enriched under SB 174. In addition to providing confidence to
clients, the plan would stretch limited funds further. Having
the shared vision in statute, she said, would ensure the
underlying philosophy does not change when there are shifts in
funding or political focus.
MS. STIEHR, in response to the previous question from
Representative Saddler, offered the following numbers of those
who would be directly impacted by [SB 174]: 222 children with
complex conditions; 2,085 people who receive the intellectual
with developmental disabilities waiver; and 88 with physical
disabilities, but who may not also have a mental disability.
8:22:04 AM
MS. STIEHR, in response to a question from Representative
Drummond, explained that unpaid natural support refers to a
"natural" friend of an individual with intellectual and
developmental disability, who, for example, drives the person to
a church they both attend.
8:23:50 AM
REPRESENTATIVE SADDLER offered his understanding that Ms. Stiehr
had mentioned 2,085 people get the waiver. He remarked that
certainly there are more people on the waiting list for the
waiver.
MS. STIEHR affirmed there currently are 700 on the waiting list.
8:24:26 AM
REPRESENTATIVE DRUMMOND asked for clarification about the
waiver.
MS. STIEHR answered, "A waiver is a Medicaid service that is
expanded beyond the medical limited to doctor and hospital
appointments; a waiver is services that allow for support within
the community through Medicaid reimbursement. She offered
examples, including family support, respite, residential
services, group home living, and independent living.
MS. STIEHR, in response to Representative Saddler, said she
believes that in the long term, as people are given the ability
to increasingly direct their own services, natural supports will
be enhanced, which will reduce the need for paid support, thus
saving the state money.
REPRESENTATIVE SADDLER said people with disabilities are often
entitled to a high level of care at great cost; the waivers
allow people who deserve a high level of care to receive home-
based support, which keeps them out of institutions and saves
the state money. He said, "Waivers are savers for Alaska."
8:27:36 AM
JIMAEL JOHNSON, Program Officer, Alaska Mental Health Trust
Authority (AMHTA), stated that AMHTA advocates for trust
beneficiaries, including those with mental illness, addiction,
Alzheimer's, dementia, traumatic injury, and intellectual and
developmental disabilities. She said AMHTA advocates for
crucial services to the state's most vulnerable population
through community-based services. When those services are
"person-centered and directed," they effectively reduce the need
for costlier institutional care. She said the goal of AMHTA is
to serve as a catalyst for change and improvement in Alaska's
health care. The trust continues to support the work of
developmental disabilities collaboratives, which designed the
vision on which SB 174 is based. Ms. Johnson said AMHTA
recognizes SB 174 as framework to support people with
disabilities in a way that increases quality of life for those
individuals, their families, and their communities. The
proposed legislation would do this by helping the individual
with a disability to more actively determine his/her level of
community-based care. She thanked the sponsor and committee for
supporting SB 174.
8:30:00 AM
REPRESENTATIVE SADDLER asked again for the numbers of people
statewide with mental or physical developmental disabilities.
MS. JOHNSON said she does not have an answer now, but could get
one.
8:30:46 AM
MICHAEL BAILEY, Chief Financial Officer, Hope Community
Resources Inc., stated that Hope Community Resources Inc.
provides many of the services previously mentioned. He said
many systems of service delivery are often "siloed and
traditionalized." Under SB 174, a system of paid and unpaid
support would be utilized to enhance the abilities of Alaskans
rather than solely address their disabilities. He said, "This
bill promotes flexibility and greater inclusion, which then
results in ... better stewardship with state funds and greater
opportunity for individuals to experience stability." He
offered the example of his daughter, who participated in "The
Battle of the Books" in middle school, as part of a team, on
which was a girl with a disability. He said the girl's friend
supported her and the team took the state title. Mr. Bailey
talked about inspiration resulting from the girl on the team
with a developmental disability and moving away from traditional
medical models. He mentioned directives from the federal
government to actively maintain Medicaid funds. Mr. Bailey said
SB 174 is not "an open checkbook" but promotes partnerships and
new models of support via a value-driven philosophy. He said
Hope Community Resources Inc. asks for the support of the
legislature. He said people say, "It takes a village to raise a
child." He submitted, "It takes a community to help Alaskans
with disability live meaningful lives."
8:33:58 AM
MICHELE GIRAULT imparted that she is the guardian of two adults
with disabilities, as well as a board member of the Key
Coalition of Alaska. She concurred with the comments that had
been made thus far in previous testimony. She said as a
guardian of one individual who receives a Medicaid waiver and
one who is on a waiting list, she wholeheartedly supports
putting into statute a vision of state support for all people
regardless of disability. She said SB 174 sets a value-driven
structure for how Alaska treats people and designs service. Ms.
Girault said a service system can be challenging for people with
disabilities; it is highly regulated and can be exhausting,
especially when mental illness is added to the mix. She said a
service delivery system based on flexibility results in
community-based services that cost far less than institutional
care. She talked about collaboration and determining how
decisions impact the provider and receiver of the service. She
said the Key Coalition of Alaska had this issue as its first
platform and appreciates the sponsorship of Senator Micciche and
the time the House Community and Regional Affairs Standing
Committee is taking to consider the issue. She urged the
committee to support SB 174.
8:37:02 AM
REPRESENTATIVE SADDLER requested that "aspirational language" be
translated into "some hard, practical applications."
MS. GIRAULT said it is difficult to answer specifically because
people are just starting to think about how it could work.
Notwithstanding that, she said the woman she supports, who is on
the waiting list, has some grant services that will end as of
June 30, [2018], for fiscal reasons and because of [budget] cuts
that have been made to help stabilize other services. She said
a flexible service would allow consideration of varied services,
such as a companionship service that would allow her to access
community safely. She said perhaps there is a way to deliver
services outside of the Medicaid waiver specifically or perhaps
a waiver could be added within the Medicaid waiver. She
mentioned mental illness that older people with disabilities
sometimes experience, and she indicated one consideration is how
those people can access [mental health] services easily within
their environment. She explained that some regulations restrict
how those services are delivered. She said the idea is to set
the vision that would allow departments to come together and
share the funding sources to benefit individuals - to reduce the
complexity of services and "ease the path for people who are
asking for help."
REPRESENTATIVE SADDLER mentioned [daytime rehabilitation]
("dayhab") and asked if there was a change under IDB waivers
that would result in money saving.
MS. GIRAULT answered that dayhab has been a service that has
been somewhat individualized. She said she thinks guardians
partnering with providers are looking for ways to create bigger
group service for activities rather than individual activities.
She said that is more natural for people who go bowling or to
church with other people; however, people with disabilities need
assistance to be safe, to access transportations, and to
communicate their needs.
8:42:45 AM
MAGGIE WINSTON, Chair, Governor's Council on Disabilities and
Special Education, referred to Senator Micciche's opening quote
about people being just one step away from a calamity that
necessitates a need for services. She said that is her story.
She was struck with a virus at age 21 that left her with spinal
chord injury and no use of her arms and legs. She said this
threw her into an entirely new life, in which she had to find
services that would enable her to live in her home and community
as a young person and mother. She said she receives a package
of services, but sometimes the size of the package is not
appropriate. She advised that SB 174 would allow individuals to
receive services that are more fitting to them.
8:45:44 AM
MS. WINSTON, in response to Representative Saddler, named types
of services that individuals can receive, including supported
employment, supported living, and group home living. All of
them provide different reimbursement rates and regulations and
different agencies that cover them. A broad scope of services
can be complicated in terms of receiving in-home care, for
example. In response to a request for clarification, she said
[SB 174] would make it easier for individuals to receive
services by making it easier for the person who needs the
services to direct how he/she would like to receive them.
8:49:13 AM
RIC NELSON gave verbal testimony in support of SB 174, which was
then interpreted by Charles Hudson, as follows:
My name is Ric Nelson, and I work for the Governor's
Council on Disabilities and Special Education. ...
So, I would like to mention a couple of things. March
is disability awareness month. And we have about
11,500 people with disabilities in Alaska right now.
So, for my own story: I've received a waiver for the
past 12 years, and if I didn't have a waiver, I don't
think that I would be where I am right now. I have
three degrees, and the latest of those degrees is a
Master's in Public Administration. And after my
Master's in Public Administration, after I received
that degree, I was hired to work for the council. And
I make decisions on the services that I receive. And
I think the people that are receiving services should
have the same opportunity, because we're all human
beings, and we should have the same opportunities as
anybody else. And I think that we should have the
final decision to have the care that we need at the
right time and at the right place. So, I urge you to
pass this bill, please.
8:54:27 AM
The committee took a brief at-ease at 8:54 a.m.
8:54:54 AM
CO-CHAIR PARISH noted that Duane Mayes was available for
questions.
CO-CHAIR PARISH opened public testimony on SB 174. After
ascertaining that there was no one who wished to testify, he
closed public testimony.
8:55:41 AM
REPRESENTATIVE SADDLER asked Mr. Mayes for information regarding
the number of people with disabilities of various types in
Alaska.
8:56:01 AM
DUANE MAYES, Director, Anchorage Office, Division for Senior and
Disability Services (DSDS), Department of Health and Social
Services (DHSS), said there are just under 12,000 people with
disabilities [in Alaska]. There are roughly 120,000 to 125,000
seniors 65 years of age and older with disabilities.
REPRESENTATIVE SADDLER asked how the provisions under SB 174
would help DSDS reach its goals in serving the people of Alaska.
MR. MAYES prefaced his answer by sharing his background. He
said both his parents are deaf and communicate through American
Sign Language and struggle to understand English. He explained
that American Sign Language has a grammar and syntax different
from English, and he had to help his parents interpret English
so that they were able to make sound decisions. Mr. Mayes said
when he was in high school, he worked with students with
developmental disabilities to create a support system.
MR. MAYES opined that SB 174 is "a very defining bill." He said
it makes sense. The division would train care coordinators to
understand the person with disabilities is in the driver's seat.
Further, the division would work to build natural supports, such
as the example of a person with disabilities going to a movie
with others. He said natural support is not going to cost the
state money. He predicted that over time the state would
realize an efficiency on this model, which he opined should have
been tried a long time ago.
REPRESENTATIVE SADDLER asked Mr. Mayes to talk about how HB 336
and SB 174 compare and how they would interact.
MR. MAYES said both bills complement a person-centered model
where there is supported decision-making, much like how he
helped his parents when he was in high school. He said SB 174,
in particular, "puts the individual back in the driver's seat,
helping them to kind of craft their plan, looking to some of
those natural supports that can be built into the plan." He
opined that the marriage between the two bill is important.
REPRESENTATIVE SADDLER noted that SB 174 has a zero fiscal note.
He asked Mr. Mayes to give his perspective on the long-term
financial implications of SB 174.
MR. MAYES replied that he does not see SB 174 as being a burden
on the state, because there would be efficiencies in state
resources.
9:01:50 AM
REPRESENTATIVE DRUMMOND said as a former school board member and
current chair of the House Education Standing Committee, she
sees many services provided in the preschool and K-12 system for
children with special needs. She asked if there is an
intersection between the numbers of people served in the state
in the K-12 system and adults beyond the system and whether Mr.
Mayes expects any impact on the K-12 system with "the shared
vision of this ... bill."
MR. MAYES answered that he does not see that as being an issue.
In response to a follow-up question regarding the 12,000 figure,
he said a small percent of that number is comprised of those in
K-12. He repeated the information from Ms. Stiehr that 2,080
individuals are currently receiving services through the IDB
waiver, and a small percent of those individuals are in the
education system.
REPRESENTATIVE DRUMMOND added, "As well as children with complex
medical conditions."
MR. MAYES responded in the affirmative.
9:03:53 AM
COREY GILMORE testified that he receives services through the
waiver mentioned by Mr. Mayes. He said he supports SB 174,
because currently "everything is about us but not directed by
us." He said a plan of care for a person with a disability
states everything that the person with the disability agrees to
do. He indicated there may be an hour to an hour and a half
where people talk about the person with the disability and then
maybe five minutes when they ask the person what he/she wants to
do. He said, "We need to turn that on its head." He said,
"Some people need help with that, and that's fine - that's okay
- but as much as possible, those of us who have to live with
this kind of chair need to be directing it." In response to Co-
Chair Parish, he said he works in the community and has the
honor of serving on the Governor's Council on Disabilities and
Special Education, although he was testifying on his own behalf.
9:06:44 AM
REPRESENTATIVE SADDLER noted that Mr. Gilmore was working toward
becoming a youth pastor, and he asked if SB 174 aligns with any
of the spiritual principals he teaches.
MR. GILMORE responded that he always says life requires
participation and he teaches that more important than believing
in God is for us to do our best for God and to help others. He
said part of SB 174 is about living better. He said a typical
goal of someone with a disability might be to brush his/her
teeth every day. He said one of his goals is to get to school.
He indicated that SB 174 is about learning to write a plan of
care that addresses what [a person with a developmental
disability] wants and needs. Mr. Gilmore concluded, "I feel
called to make a difference."
9:08:49 AM
CO-CHAIR PARISH announced that SB 174 was held over.
| Document Name | Date/Time | Subjects |
|---|---|---|
| SB 174 Supporting Documents - Written Testimony - Laura Bonner - 3.13.2018.pdf |
HCRA 3/13/2018 8:00:00 AM HHSS 3/29/2018 3:00:00 PM |
SB 174 |